Wednesday, February 1, 2012

Kristen H. Perry, assistant professor of elementary literacy at the University of Kentucky College of Education, draws on her experience with refugees to argue that "Existing ethical guidelines may be inappropriate for the research designs qualitative researchers use and the communities they study, in part because they are based on positivistic, biomedical research paradigms."

[Kristen H. Perry, "Ethics,Vulnerability, and Speakers of Other Languages: How University IRBs (Do Not) Speak to Research Involving Refugee Participants," Qualitative Inquiry 17 (2011): 899–912, DOI: 10.1177/1077800411425006]
A returned Peace Corps volunteer, Perry sought to build on her experience in Africa by working with orphaned Sudanese youth in the United States. She describes her experience:

As an emerging researcher, I at first was quite naive about research ethics; without much critical thought, I accepted the ethical requirements set out by federal regulations and as applied by my institution. However, when one Sudanese youth refused to participate in my first study—simply because I was required to change his name, when he wanted to be identified—I began to question the appropriateness of ethical guidelines for research that are regularized and codified through university IRBs. While ostensibly protecting the rights of research participants, the ethics requirements (or, at the very least, the ways in which they were interpreted by IRB officials) did not seem to truly respect the rights of ethnographic participants or to account for the situated contexts in which qualitative research occurs.

A number of subsequent experiences (including being told by an IRB official that research involving refugees is inherently unethical) encouraged me to more critically examine the discourses surrounding research ethics, particularly with respect to the inclusion of refugees and other marginalized participants in research.

To determine if such unhelpful IRB practices were widespread, Perry analyzed IRB requirements at 32 research-intensive institutions. She found that " a strong orientation toward medical and experimental models of research" affects even those universities that have separate "nonmedical" IRBs. Yale's Social, Behavioral, and Educational IRB defines "vulnerability" in medical terms: "Examples of individuals who may have impaired consent capacity include women in active labor, individuals who have suffered a stroke or other acute and severe illness, individuals under the influence of drugs or alcohol, individuals experiencing considerable pain, individuals under extreme emotional distress (e.g., learning of a newly diagnosed life threatening or terminal illness for self or loved one, anticipating imminent major surgery), and individuals suffering from cognitive disorders or mental disorders." Similar language appeared on websites at the University of Kentucky, the University of Iowa, and the University of Illinois.

The problem with such frameworks, Perry argues, is that they "inappropriately conflate[] vulnerability with incompetence," rather than putting the onus on researchers to help people make those decisions. For example, "the participant’s ability to make an informed decision does not rest on whether or not he or she speaks English but rather on whether or not the researcher has presented the information in a language that is accessible to her. A non–English-speaking participant could meaningfully engage in the process and make an informed decision if the researcher were fluent in the participant’s preferred language, or if a qualified translator were present."

Perry hints that she would like to do away with IRB review of social science, but laments that "Current policy and guidelines are . . . probably a reality that will not go away, at least not in the foreseeable future."

In lieu of wholesale reform, she recommends that we rethink the concept of vulnerability:

If vulnerability is a product of an interaction between participant, context, and research design, rather than an inherent characteristic, then checklists of certain types of participants are not an appropriate way for IRBs to evaluate the potential vulnerability of those included in research. Instead of assuming that all humans have the potential to be vulnerable, checklists imply that a person either is or is not vulnerable and that this state can be determined according to some predetermined characteristic such as sex, race, age, or language. If all human participants are potentially vulnerable, a more appropriate assessment of vulnerability would be a qualitative description of all of the potential research participants targeted by the study, the ways in which those participants may be vulnerable, and what the researcher(s) will do to address and mitigate those potential vulnerabilities.

Missing from Perry's analysis is an estimate of the additional burdens her recommendations would impose on researchers and IRBs alike. For example, she advocates "Requiring all researchers, regardless of potential participants or research design, to describe the cultural and linguistic contexts for their research, instead of only requiring this for participants who are perceived to be 'Other' than the mainstream." That would certainly put immigrants on a more level footing with native English speakers, but it would also massively increase researcher workloads.